very rough day post Folfiri + Avastin

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jep
Posts: 236
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

very rough day post Folfiri + Avastin

Postby jep » Fri May 22, 2020 4:15 pm

Hey everyone . . . my husband has been on several different chemo regiments for stage 4 colon cancer but I've never seen him as sick and worn down as he is today (treatment was on Thursday) . . . has anyone else had an intense reaction to Folfiri + Avastin?

He hasn't eaten all day . . . could barely get an Ensure down . . .
Thanks,
jep
Wife of DH (47) Stage IV CC 5/16/17
T Loc: recto-sig
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (started in 11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/4/20 -

tater
Posts: 126
Joined: Wed Jul 19, 2017 5:53 pm

Re: very rough day post Folfiri + Avastin

Postby tater » Fri May 22, 2020 11:30 pm

My wife's first round of FOLFIRI and Avistan in December was brutal. She was ready to give up and she didn't eat for close to a week. I got worried as you can understand but she slowly recovered in time to do it all over. She is no 10 of 12 rounds done and they have been a lot better. I don;t know if it was the initial shock of the first round to the body or what but we have found that if she goes to chemo after eating and taking a lunch she does a lot better.
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 Coloanal Anastomosis, Hysterectomy & External Nodes Removed W/ileostomy
Clear Margins NED
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18, 1.3 12/18, 1.8 3/19, 2.5 6/19
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18
Small Spot on right ureter surgery 10/30/19 adhered to artery
Dec. 2 start 12 rounds FOLFIRI

jep
Posts: 236
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: very rough day post Folfiri + Avastin

Postby jep » Sat May 23, 2020 7:13 am

Thank you Tater! I was thinking that too . . . maybe his body was just reacting to drugs he hasn't had before, or maybe his body had been through so much at this point that it was just too much (?)

Well, the good news is he woke up this morning feeling a bit better . . . he wasn't even really talking to me yesterday and he wasn't eating . . . he was barely able to drink w/o spitting up or vomiting . . . it was pretty scary, as he's always tolerated chemo so well . . .

Hoping he can get some nutrition today . . .

How is the Folfiri + Avatin working for your wife?

Thank you!!
jep
Wife of DH (47) Stage IV CC 5/16/17
T Loc: recto-sig
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (started in 11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/4/20 -

lovelife789
Posts: 148
Joined: Thu Aug 24, 2017 5:28 am

Re: very rough day post Folfiri + Avastin

Postby lovelife789 » Sat May 23, 2020 11:38 am

I had exactly that same reaction together with neverending vomit after my folfiri+avastin. I was at one point crawling on the floor coz I was too weak to walk to the bathroom to vomit some more.

My WBC dropped rapidly and I had lost 7lbs in one week as well by the second round. The Dr felt I probably couldn't make it to 12 rounds like that, so he reduced dosage by 20% and I pulled through all 12. My Dr told me some people react strongly to folfiri and I may just be one of them.

Your husband is not alone !!
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Mod. differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - 6/30 - NED
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
8/30 - VATs
8/30 - 4/30 - NED
5/28 - uptake seen in 1 x PALN, 1x common iliac, cloudy in Liver
FOLFIRI + Avastin

jep
Posts: 236
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: very rough day post Folfiri + Avastin

Postby jep » Sat May 23, 2020 11:46 am

Wow Lovelife! That is crazy!! Yes, this is the first time in 3 years that my husband has had such an intense reaction to any drug . . . he's about to have a little soup (first food since Thursday) . . . I'm wondering what his bloodwork will be like in 2 weeks . . . thank you for your input . . . how are you doing now?
Wife of DH (47) Stage IV CC 5/16/17
T Loc: recto-sig
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (started in 11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/4/20 -

lovelife789
Posts: 148
Joined: Thu Aug 24, 2017 5:28 am

Re: very rough day post Folfiri + Avastin

Postby lovelife789 » Sat May 23, 2020 1:17 pm

I'm doing well :) minor recurrence but no treatment for now. Enjoying life :P

What I did back then was I would always have fresh lemon with me. Whenever I felt like committing, I would cut it open and sniff the lemon. Of course I had all the anti nausea medication in the world too (some gave me constipation yikes!) But I felt if lemon could help, let's do it the natural way.

After a few rounds, the main problem I had was I vomited so much to the point I would vomit even before I had chemo. So my Dr gave me some anti-anxiety medication to take, an anti-nausea patch that I would stick to my arm 12 hrs before infusion AND an anti nausea pill to take an hour before infusion. AND the lemon, AND also some tomato soup ready whenever I felt like having a sip....

I also felt very little side effect during folfox + erbitux. I had a bit neuropathy and horrible skin but my body felt fine. I think the fact I tolerated folfox so well misled me a bit about folfiri. But I believe your husband can make it!
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Mod. differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - 6/30 - NED
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
8/30 - VATs
8/30 - 4/30 - NED
5/28 - uptake seen in 1 x PALN, 1x common iliac, cloudy in Liver
FOLFIRI + Avastin

jep
Posts: 236
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: very rough day post Folfiri + Avastin

Postby jep » Sat May 23, 2020 3:18 pm

Great info Lovelife....thank you!
Was this your only time taking Avastin?
When did you finish?
Wife of DH (47) Stage IV CC 5/16/17
T Loc: recto-sig
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (started in 11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/4/20 -

lovelife789
Posts: 148
Joined: Thu Aug 24, 2017 5:28 am

Re: very rough day post Folfiri + Avastin

Postby lovelife789 » Sun May 24, 2020 11:02 am

Yes, it is my only time taking avastin. It is so easy (had erbitux before which gave me breakouts from head to toe), only runny nose. But my platelet did not climb back to normal level for a long time. I finished in Nov 2019 :D :D .
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Mod. differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - 6/30 - NED
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
8/30 - VATs
8/30 - 4/30 - NED
5/28 - uptake seen in 1 x PALN, 1x common iliac, cloudy in Liver
FOLFIRI + Avastin

tater
Posts: 126
Joined: Wed Jul 19, 2017 5:53 pm

Re: very rough day post Folfiri + Avastin

Postby tater » Tue May 26, 2020 9:48 am

jep wrote:Thank you Tater! I was thinking that too . . . maybe his body was just reacting to drugs he hasn't had before, or maybe his body had been through so much at this point that it was just too much (?)

Well, the good news is he woke up this morning feeling a bit better . . . he wasn't even really talking to me yesterday and he wasn't eating . . . he was barely able to drink w/o spitting up or vomiting . . . it was pretty scary, as he's always tolerated chemo so well . . .

Hoping he can get some nutrition today . . .

How is the Folfiri + Avatin working for your wife?

Thank you!!
jep


Sorry for taking so long to post back its been very busy. She has done 10 of 12 rounds now. We took a six week break which was heaven sent so she could do some additional radiation on the spot where it reoccurred. We take another scan in a month or so to see how it worked. Fingers crossed that it is working right? THe next rounds got a lot better. IT is important that she has food in her belly before they start to give her the chemo otherwise she gets really sick in the chair. Later rounds with my wife she gets really bad cramps and painful diarrhea. It messes your gut up for sure. SHe is loosing most of her hair this time also. She had Avastin with the FOLFOX and I don;t think it really bothered her, I think its the FOLFIRI that is rough on her.
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 Coloanal Anastomosis, Hysterectomy & External Nodes Removed W/ileostomy
Clear Margins NED
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18, 1.3 12/18, 1.8 3/19, 2.5 6/19
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18
Small Spot on right ureter surgery 10/30/19 adhered to artery
Dec. 2 start 12 rounds FOLFIRI

jep
Posts: 236
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: very rough day post Folfiri + Avastin

Postby jep » Tue May 26, 2020 1:41 pm

Yes, thank you all for your responses . . . unfortunately I had to drop my husband off at the ER today . . . he hasn't really been able to eat, and he isn't passing gas or stool . . . his doctor told him to get to the ER . . . I couldn't go in with him and I'm nervous that he will be admitted and I won't be able to visit him . . .
Wife of DH (47) Stage IV CC 5/16/17
T Loc: recto-sig
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (started in 11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/4/20 -

Claudine
Posts: 346
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: very rough day post Folfiri + Avastin

Postby Claudine » Tue May 26, 2020 2:56 pm

Definitely a very difficult time to have loved ones in the ER or undergoing intense medical procedures. Hopefully he does not have to stay in the hospital for long and they figure out what can be done from home. Keep us posted and hang in there XXXXX
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 7.6
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 small uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20


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